New Zealand: Covid-19 vaccinations for people with ME/CFS

> It was reported by RNZ as a quote from a MoH spokesperson, that there is not sufficient evidence to suggest that lower dosing will mitigate adverse reactions to the vaccine. It is correct that no trials have been conducted into reactions to lower dosing for pwME. However, in studies that have been conducted into fractionated dosing, reduced doses appear to reduce reactogenicity (adverse side effects).

this comment by the charity reinforces my lack of being entirely convinced that the officials "completely understand" m.e. and other diseases not being studied. it really felt like boilerplate.

not concerned at this time /for myself/ about being able to enter shops as i am bedridden (also not same country). i want studies done someplace in the entire world for all of us to make an informed decision and i don't think it is too much to ask?

i am bedridden and have non normal immune system and if i get worse, i will have no care at all. no food no medicine. i want to be vaccinated very much not least because my vaccinated carer is taking more and more risks, feeling invulnerable, and has never been one for hygeine or cleaning, washing hands more than a couple of seconds before food prep, etc.

the numbers on the survey are too small but do not look good. i need some source of information that is reasonably reliable to make the decision and if so which vaccine to do. and small doses if that is a good idea.

> This was based on Professor Warren Tate’s advice that people with ME/CFS who often experience severe food allergies, chemical hypersensitivities, are prone to frequent debilitating relapses and have a significant compromised level of activity, may be at a higher risk to adverse side effects to vaccination in comparison to people with ME/CFS who do not have these extra dimensions of the illness.

i have a significant compromised level of activity. i want studies, low doses, etc. i am really concerned.

 

@Samuel

Have you talked to your GP about your concerns around the vaccine? have you talked to the employer of the carer about your concerns? I know that would be very difficult as you are bedridden, do you have anyone who can advocate for you? It must be incredibly difficult to speak up in this situation.

The NZ context is that there is no scientific studies into fractionated dosing on pwME with Pfizer anywhere in the world to provide the necessary scientific evidence to advise pwME. The ANZMES survey was only of about 500 of the estimated 20,000 pwME in NZ and would be skewed towards people who thought they would or have had side effects. The Pfizer fractionated dose trial of pwME did not get ethical approval but may still go ahead in the future.

That leaves us to weigh everything up by researching on here and other sites and discussing with our GP’s who can then seek help from immunologists locally or on the vaccine panel. We were advised not to have the second dose if in relapse. We can choose not to be vaccinated.

So basically it is roll the dice and hope for the best like all pwME across the world. I am severe but not bed bound and have some MCAS features to my illness and minor neuroinflammatory effects with my first dose and our ME clinicians advised the Dr Klimas protocol of supplements to support mitochondrial function (not readily available in NZ and super expensive so I have not taken them) but took my regular antihistamines an hour before and rest prior. So far so good with the second dose.

Other pwME in NZ are deciding not to be vaccinated until more evidence is presented to them and actively petitioning the govt to do trials.

The CDC is doing a fractionated dose trial on Pfizer in a healthy population, worldwide, but have yet to release their findings. Moderna is also doing a fractionated dose study on a healthy population. But that can’t always be extrapolated to pwME but gives some information on the ability to make enough antibodies to fight the virus.

Our country has a very precarious but modern health system, it is not as well funded as people overseas may think and not compared to Europe, it is run to capacity, at the best of times prior to covid and is showing strain with only 100-200 cases daily and most of the pop are still in lockdown. But we are nearing a 90% vaccination for the entire population.

One of my decisions to take the risk of getting vaccinated while in relapse (I was previously mod-severe with other health conditions) is I know our GP’s and hospitals are going to be run off their feet and won’t be able to provide normal health services to people like me. That goes for any in-home care provided by the govt which will be spent on acute covid cases in the community once lockdown is lifted.

 

> Have you talked to your GP about your concerns around the vaccine?

yes. he knows nothing about m.e. or my type of angioedema [whatever type it is idk either which is rare and is triggered by extremely tiny doses of a common substance] or mcas [which i test positive for and i am taking 4-6 cetirizine plus fexofenadine each day already and very allergic and dust and mold exposure; carer never cleans], or my cvid numbers, or my many other comorbidities.

he interrupted my concerns [edit: re m.e. statistics] to say [edit: definitively] it would be tempting fate with all my health issues to get vaccinated. but later said in a speculative voice but i could get covid. my conclusion is that he did not know what to advise.

> do you have anyone who can advocate for you?

no.

> It must be incredibly difficult to speak up in this situation.

nobody to talk to. [edit: removed unnecessary stuff.]

> The NZ context is that there is no scientific studies into fractionated dosing on pwME with Pfizer anywhere in the world to provide the necessary scientific evidence to advise pwME.

at first i thought pfizer was the least bad but now i don't know given tate's comment. is it only pfizer?

> The ANZMES survey was only of about 500 of the estimated 20,000 pwME in NZ and would be skewed towards people who thought they would or have had side effects. The Pfizer fractionated dose trial of pwME did not get ethical approval but may still go ahead in the future.

also only 4 entrants who were unable to care for selves or similar iirc. survey not say if relapse never recovered.

> That leaves us to weigh everything up by researching on here and other sites and discussing with our GP’s who can then seek help from immunologists locally or on the vaccine panel. We were advised not to have the second dose if in relapse. We can choose not to be vaccinated.

idk about any vaccine panel or immunologists where i am. my case is so complex [wish i knew what to leave out] that 2 specialists found my description too confusing.

wherei am is in a spike not ging d0own and among the very very very worst in the world per capita for covid and politics makes probability of lockdown basically zero.

> So basically it is roll the dice and hope for the best like all pwME across the world. I am severe but not bed bound and have some MCAS features to my illness and minor neuroinflammatory effects with my first dose and our ME clinicians advised the Dr Klimas protocol of supplements to support mitochondrial function (not readily available in NZ and super expensive so I have not taken them) but took my regular antihistamines an hour before and rest prior. So far so good with the second dose.

already taking high doses of antihistamines and they are losing effect as allergies and other effects are strong.

hope i can get klimas supplements for possible vaccination but takes me years do simple things exeutive dysfunction.

> Other pwME in NZ are deciding not to be vaccinated until more evidence is presented to them and actively petitioning the govt to do trials.

thank you to those asking for trials.

> The CDC is doing a fractionated dose trial on Pfizer in a healthy population, worldwide, but have yet to release their findings. Moderna is also doing a fractionated dose study on a healthy population.

good news. but will the results come out before my carer transmits covid to me from lack of hygeine and the risks in one of the worst places in the world. also my teeth REALLY NOW need dentist will hve to go whehter want to or not.

> But that can’t always be extrapolated to pwME but gives some information on the ability to make enough antibodies to fight the virus.

yes it is at least some information. if encouraging i would just try it on the possibly wrong intuition that low = good.

> Our country has a very precarious but modern health system, it is not as well funded as people overseas may think and not compared to Europe, it is run to capacity, at the best of times prior to covid and is showing strain with only 100-200 cases daily and most of the pop are still in lockdown. But we are nearing a 90% vaccination for the entire population.

low vaccination rate here. politics/misinformation.

> One of my decisions to take the risk of getting vaccinated while in relapse (I was previously mod-severe with other health conditions) is I know our GP’s and hospitals are going to be run off their feet and won’t be able to provide normal health services to people like me.

that sounds logical. i can understand that.

> That goes for any in-home care provided by the govt which will be spent on acute covid cases in the community once lockdown is lifted.

i live in a place where in home care is not provided by the govt.

 

It is true, he does not know and very hard for him to predict if you will be worse off having the vaccine or getting covid.

I lived in a very large country east of Europe during the pandemic and I know there that there was mass disinformation amongst citizens and even more from govt, low vaccination and a very strained Public Health Service and almost non-existent govt sponsored in-home care and now has very high rates of covid, so if it is anything like you are experiencing in your country, I can understand your fears and worries.

Does your GP have any sense of responsibility for providing you with specialist information like from an immunologist? Could he refer you to one. You may not have ready access to one dependent on your locality but they could phone one and get better advice for you.

In NZ, with significant MCAS some people have been given a course of steroids by their GP to take at home if their MCAS is activated after vaccination, or if prone to anaphylaxis due to an ingredient in the vaccine, be supervised by an immunologist during and after vaccination at their hospital clinic and be admitted to hospital for observation. I gather that may not be an option but it might be worth your GP exploring.

Pfizer is the official first mRNA vaccine but they have been investigating it for many years. Astra Zeneca/Sputnik have viral (adenovirus) vectors with the spike protein engineered into it so is more like regular vaccines that have been around for many years.

You may have read this but it has lots of links related to ME Clinicians recommendations and also MCAS which you might find useful. Sorry I don’t know enough about immunology to be able to advise you further but hope you can find a solution or science hurries up and finds one.

https://me-pedia.org/wiki/COVID-19_vaccines

sorry I am still learning how to use this site so this is a bit of a mess

 

Viral vector vaccines are nothing like the regular vaccines that have been around for many years. Adenoviruses do not have lipid envelopes and hence cannot display spike proteins on their surface like a traditional live attenuated or inactivated viral vaccine. Viral vector vaccines rely on 'transfecting a cell' with their DNA, that is then transcribed to produce the spike protein (but they are engineered to lack the genes for reassembly, so that they don't form new adenovirus virions). This is not completely dissimilar to how an mRNA virus transfects cells with RNA before the spike protein is produced. The risks of both types of novel vaccines (viralvectors and mRNA or DNA based vaccines) is cells elsewhere in the body can become transfected and start producing spike proteins - this is why they can cause myocarditis/pericarditis - cells in the lining of the heart are producing spike proteins and leads to those cells being attacked, and the resulting inflammation.

"Traditional" Subunit vaccines on the other hand have a fixed dose of spike protein and there is less chance of stray spike proteins causing problems elsewhere in the body as they are mostly localized to the muscle and associated lymph nodes.

 

On TV1 news last night.

More at link, text and video.

https://www.1news.co.nz/2021/12/07/calls-for-vaccine-exemptions-for-chronic-fatigue-sufferers/

 

..how could this have happened to me by just catching covid (1st version) ?
..without any vaccine ?

 

In the same way - the cells lining the heart get infected with the virus and subsequently get targeted by the immune system.

 

for what i understand, its the spike protein causing the heart inflammation.

what do you think, @Snow Leopard, or what would you do if you had trouble with the heart during covid-pandemy: mRNA-vaccination or not ?

vaccination is basically the spike-protein in quite high dosage.
we know, it may cause heart inflammation.

 

It is not merely the presense of the spike protein, but fragments of that protein being presented on major histocompatibility complex or toll-like receptors in significant numbers - I suggest this requires infection of the cells by a live vaccine or transfection by viral-vector or mRNA vaccine.

 

@Snow Leopard
...for people that ran into heart-problems with covid/covid vaccine...

would that mean that every vaccine (or virus) with a spike protein may be problematic (cause heart issues) for them ?

 

It means the risk for subunit vaccines is very low because very few spike proteins fragments will be presented on the surface of those cells.
"Transfection" means the spike protein is produced inside the cells themselves, which leads to far higher numbers for the viral vector and mRNA vaccines.

 

Seems very complex i.e. to produce subunit vaccines but it has been done

Is the time lag for producing subunit vaccines longer that mRNA vaccines, modified (adeno or whatever) live virus (Astrazenica type)?

 

No one understands ME --- Chris Ponting's GWAS study (commencing next month?) might provide clues (in 6 months/year/18 months?).

 

Yes, part of the problem is a lot more quality control processes, due to how they are produced.

Novavax seems to be having problems with their production. The Cuban COVID vaccine Abdala has demonstrated high efficacy and is fairly traditional in terms of production. Sadly due to politics, we're not allowed to buy it. I don't know how long it will take them to update it for Omicron though.

 

Wow hadn't realised that Cuba had produced a subunit vaccine - it must be quite a challenge to identify which bit of the virus to replicate i.. in the vaccine. Do they look at the targets the immune system is actually focused on and try to replicate those? Also, it must be difficult to replicate that target e.g. the 3D structure of the subunit?

If Cuba delivered this then why didn't the big guys?

 

It's not magic, the subunit is made by inserting the genetic sequence into other species eg yeast, moth larvae, plants, or cell culture, using some sort of tagging mechanism for extraction of the subunit and subsequent purification. Most subunit vaccines use whole proteins, eg a whole spike protein, or in the case of Influenza, neuraminidase and hemagglutinin.

Abdala is novel as if focused on the receptor-binding domain, rather than the whole spike protein, suggesting much of the efficacy (against symptomatic infection) is from blocking the virus from infecting cells in the first place.

 

Interesting so you use e.g. yeast to produce the subunit, with the correct 3D structure ---- hadn't heard about moth larvae.

 

@Snow Leopard
could you please give your opinion - just your best guess?

in case someone has tissue and heart problems (ACE) from covid (the spike protein), what vaccine would you think has least impact ?

perhaps the cuban abdala ?

 

if i personallly had a subunit vaccine it would have to be different from the novavax, from what i hear. the saponins allegedly used in it for adjuvant could trigger life threatehing angioedema which /extremely/ tiny amounts of soaap can. the type of angioedema is not determined, but it is non-histaminergic. uptodate and the web find nothing bt classic ae sx/durations and ci-inh normal.

idk i otehr faccines also use saponins for adjuvant or whether soapbark saponins are somehow unrelated t common household chemicals.